'It wasn't all devastation': Rachel's surprising decision

Rachel Namoa 30 yrs (2nd from left) with daughters Jean Namoa 1yrs (right) and Eve Namoa 2yrs (left) two of her three daughters, at home in Whalan. Rachel has worked with the Nepean Hospital to write a information booklet about anecephaly which her now deceased daughter Lovette had. 14th December, 2017. Photo: Kate Geraghty

No one expected Rachel Namoa would choose to give birth to her daughter.

At her 12-week scan in 2013, Mrs Namoa and her husband William Namoa were told their unborn baby had anencephaly. The baby would be born without major parts of her brain, skull and scalp.

The congenital condition occurs when the upper portion of a fetus' neural tube does not fully close, usually between the 23rd and 26th day of gestation.

The fetus' cerebrum fails to fully form, which includes the part of the brain responsible for cognition. The bone and skin that would usually protect the brain also fails to form.

Babies are still born or die minutes, hours, or a few days after birth.

There is no definitive cause, though there is evidence suggesting a link between low folic acid levels. Rates of neural tube defects dropped dramatically with the fortification of wheat flour products in Australia in 1995.

"They had no information to give us because they just assumed we'd terminate [the pregnancy]," Mrs Namoa, 30, said.

But the Namoa's were adamant they would continue with the pregnancy, their second.

"I think the staff thought we were in denial and it hadn't hit us. They kept giving us opportunities to change our minds, but we were 100 per cent sure from the very beginning," Mrs Namoa said.

The Christian couple believed it was not their decision to make, "but also we really just felt this was our daughter and we wanted as much time with her as we could get", she said.

The Namoas had to ask their obstetrician staff to write 'anencephaly' on a post-it so she could Google the information for herself.

They found cold and brutally blunt clinical descriptions of the condition on medical websites intermingled with intimate personal blogs from parents of anencephaly babies.

"It wasn't all devastation," Mrs Namoa said.

"[Lovette] was perfectly safe and happy [in utero]. Why would we cut that short?"

There were dark days during her pregnancy when Mrs Namoa would grieve for the baby she would lose. But she treasured every kick, every sign Lovette was there, and every contraction as she laboured.

The day Lovette was born, Mrs Namoa held her to her chest. There were no newborn cries. The silence was heartbreaking.

"I knew she was gone ??? I didn't want to hear the silence of the heart monitor," she said.

"The strongest memory I have is how incredibly beautiful her face was. She looked just like her big sister and my husband. She's our child. In every other way she was absolutely perfect."

Four years on, Mrs Namoa has published a booklet that will be given to all parents who learn their unborn baby has anencephaly at Nepean Hospital's perinatal clinic.

The booklet's clear message to parents given an anencephaly diagnosis is "it's not your fault," and supports both those who choose to have their baby, as well as those who choose to terminate the pregnancy.

The mother of five published with the help of the Nepean Blue Mountains Local Health District.

The booklet counsels parents to consider their decision carefully, to ask questions and be guided by their doctors, and stressed health professionals should not pressure them either way unless their health is at risk.

It includes a section on termination, but predominantly gives voice to the under-represented minority of parents who decide to carry to term, something healthcare practitioners at Nepean Hospital say was lacking.

"It's about empowering families to make the decision they feel at peace with," Mrs Namoa said.

It would be terrible if parents were led to believe abortion was the only option, but it would be equally terrible if parents were pressured to continue with a pregnancy that could be an incredibly traumatic process, she said.

The booklet also includes the story of another mother, Miriam, whose son Elijah was born with anencephaly at Nepean months after Lovette.

Miriam and her husband Rob with their baby Elijah. Photo: Supplied

The strong friendship between the two women, and shared a determination to ensure parents were appropriately informed about the condition, and weren't left to stumble around in the dark, looking for answers.

Mrs Rohan, 26, has publicly spoken about her decision to continue with her pregnancy.

Gary Rohan and his wife Amie are expecting twins due in May 2018. One of the babies has been diagnosed with anencephaly. Photo: Instagram/@garyrohan16

Midwife Tracey Codner said the vast majority of parents choose to terminate, knowing the outcome would be so devastating.

"It's the hardest thing; to be told there is something wrong with your baby. Parents who choose to terminate want the decision to be made for them, and most [perinatal staff] just assume that's what they'll choose," she said.

"It's really important to give recognition of these pregnancies, whether they choose to terminate of go ahead. Parents need that recognition, especially when this used to be so stigmatised that no one wanted to talk about it."

The booklet includes personal insights that would be missing from clinical advice.

"When you are ready, you will be taken to the antenatal ward (rather than the postnatal ward where you would be surrounded by the sounds of other newborns)," Mrs Namoa wrote.

She canvasses funeral arrangements, and legal forms, outfit sizes for the newborns and snap lock bags to collect keepsakes like a lock of hair.

The booklet also lists web addresses for helpful websites and support groups.